Tuesday, June 27, 2017

Two separate
analyses demonstrate that women with access to mammograms and other breast
cancer screenings are diagnosed at earlier, more treatable, and less costly
stages.

More women were
diagnosed with early stage breast cancer after the Affordable Care Act took
effect, according to a study published this month in the journal Cancer Epidemiology. Equally
important, there was a decrease in later stage, and more serious, cancers.

Late-stage breast cancer is more
costly to treat and is more likely to be fatal than early-stage cancer.

Increases in early
diagnoses were higher among African American and Latina breast cancer patients.
In the past, the cost of mammograms has prevented many Latinas and African
Americans to receive mammograms overall or at recommended intervals.

The Affordable Care
Act eliminated copayments and other out-of-pocket costs for 45 preventive care
services, including mammograms, making them more affordable and leading to the
potential for earlier diagnoses, researchers say. Diagnosing breast cancer when
it is still in Stage 1 could improve the prognosis for thousands of women and
reduce the need for expensive and invasive treatments such as chemotherapy, wrote
lead author Abigail Silva, PhD,
MPH,
of Loyola
University Chicago Stritch School of Medicine.

The study included
470,465 breast cancer patients between the ages of 50 and 74 who were covered
by private insurance or Medicare and were newly diagnosed with breast cancer.
Researchers examined two time periods: 2007-2009 (before the Affordable Care
Act took effect) and 2011-2013 (after the act took effect). They used data from
the National Cancer Database, which includes approximately 70 percent of all
newly diagnosed cancers in the United States from about 1,500 hospitals.

Overall, the number
of breast cancers that were diagnosed at Stage 1 increased 3.6 percent, from
54.4 to 58.0 percent. There was a corresponding decrease in Stage 2 and Stage 3
diagnoses, while the proportion of Stage 4 cancers did not change.

Historically, more
white women are diagnosed with Stage 1 breast cancer, while African Americans
and Latinas are diagnosed at a higher stage. This disparity decreased following
the Affordable Care Act, as minorities saw improvements in Stage 1
diagnoses.

This is especially
significant for triple-negative breast cancer, which has been shown to be more
prevalent and aggressive among African Americans.

Cutting Medicaid
Puts Women At Risk

Tennessee women with breast
cancer were more likely to be diagnosed at later, more dangerous, stages after
a substantial rollback of Medicaid coverage for adults in the state, with the
biggest effects being among women in low-income areas, according to an analysis
published in the journal Cancer.

Researchers analyzed Tennessee Cancer Registry data from 2002
to 2008 and compared women diagnosed with breast cancer who lived in low-income
zip codes with a similar group of women who lived in high-income zip codes,
before and after Tennessee’s Medicaid restrictions. They found that women were
not only diagnosed at later stages but also experienced more delays in
treatment after the restrictions were imposed. Low-income women had a 3.3
percent increase in late-stage diagnosis compared to those with higher incomes.

Tennessee restricted Medicaid enrollment in 2005

The findings suggest that women did not get screenings or
other essential primary care that may have led to an earlier diagnosis,
according to team leader Wafa Tarazi, PhD, of Virginia Commonwealth University.
The reason: lack of affordable care.

“Medicaid rollbacks may
contribute to widening disparities in health outcomes between low-income women
and their wealthier counterparts,” said team leaders Lindsay Sabik, PhD, of the
University of Pittsburgh, another team leader.

The checkpoint-blocking drug Keytruda shrank pre-treated tumors
by more than 30 percent in 5 percent and stabilized disease in 21 percent of
women in the group. All patients who saw their tumors shrink lived for at least
another year. In comparison, the patients who did not experience tumor
regression had lower survival rates. (Remember: This is metastatic TNBC, or stage
4, not earlier, or more treatable, forms, such as stages 1-3.)

The trial included two groups of patients with metastatic TNBC.
The first consisted of 170 patients who had received earlier chemotherapy. The second
group was previously untreated and had tumors expressing the checkpoint molecule
PD-L1.

Both groups tolerated the treatment well, with 12 percent of
patients in the first group, and 8 percent in the second group reporting side
effects such as fatigue and nausea. Four percent of patients in the first
group, but none in the second, stopped the treatment because of these effects.

Monday, April 24, 2017

More than ten years after I had radiation on my breast, I
developed a skin inflammation on the radiated site. It came on suddenly, a
series of angry red veins branching across my chest where my left breast had
been, with occasional darker, pooled spots, all in a rectangular shape matching
the area where I had been radiated. My skin was smooth, with no bumps or lumps.

It was November 2016, a year and a half after my second bout
of triple-negative breast cancer. My cancer story in a nutshell: I have had
TNBC twice: once
in 2006 and once
in 2015. The second was not a recurrence, but a second primary cancer. For
the first cancer, I had a lumpectomy, chemo, and radiation. The second time,
with a tumor less than half a centimeter, I had a double mastectomy without
reconstruction.

I had absolutely no problems with radiation burns while
undergoing my original treatment, nor in the intervening ten years, although I
do think it highly possible radiation was one cause of my second cancer.

The mastectomy, though, did not go all that smoothly. I
developed seromas for months afterward, the last one being essentially a
blood-filled bruise. The surgeon drained it and, within days, it had healed,
but for a few days, the skin looked a little like the inflammation I was now
seeing. At that time, my surgeon said the skin was weakened by the long-ago
radiation and became even more damaged by the more recent surgery.

I went for a year after that last seroma with what might be
considered normal healing after a mastectomy: some arm and incision pain, but
nothing unusual. Now something was up. But what?

Radiation Recall

After checking online, I self-diagnosed radiation
recall, which can occur years after radiation. Most cases are drug-related,
caused when patients are given cancer-fighting drugs such as anthracyclines like adriamycin,
after radiation. I had been given adriamycin, but that was ten years ago. Why
would I now be having a reaction? It had to be something else. Chat rooms were
full of discussions of women with radiation recall, with causes all over the
board: scented lotions, wool, new prescriptions or over-the-counter drugs.
Treatments were equally varied: antihistamines,
steroid creams, and anti-inflammatory
drugs such as ibuprofen.

Some mentioned that chest inflammation could be lymphedema
of the trunk, which made a little sense, as my case was accompanied by pain
in my upper arm. But mine was milder than those I saw online. I had none of the
swelling that was indicative of lymphedema.

The basic message from my research, though, was encouraging:
Radiation recall is not usually a sign of a new cancer and is most likely a skin
issue, some form of dermatitis.

My inflammation looked far, far better than photos I saw
online, which showed chests that were completely red, often scaly. Mine looked
modest in comparison. The closest was this
one, which they call photo recall. Most other images made me thank my lucky
stars.

As I was trying to figure this all out, a friend who is 11
years past her TNBC diagnosis messaged me and said that she has been diagnosed
with radiation
fibrosis. So I researched that, but I had none of the scarring that is
characteristic of that syndrome. Still, it is a late effect for some breast
cancer patients and seems worse for head,
neck and throat cancer patients. Interestingly, a University of
Iowa clinical trial recommended Vitamin E for radiation fibrosis, but
vitamin E turned my skin red every time. That was one of the few direct effects
I could see, and it ran contrary to much of what I read in general about
soothing breasts to help them heal after surgery and to reduce radiation
effects.

At the same time my chest got inflamed, I had throat phlegm
that would not clear up and I remembered my friend Marilyn, who thought she had
bad allergies but ended up having a recurrence of TNBC on her chest wall. I decided
that was what was happening to me—the phlegm, as in Marilyn’s case, was an
indication of a tumor, and the skin inflammation was just verification.
Clearly, I was dying, because that is the conclusion we reach in these
situations, right?But I went to my
primary care doctor for a professional assessment, just to be sure.

By the day of my appointment, the inflammation had almost
disappeared—only a couple inflamed veins remained. The doc had to use a
flashlight to see the reddened veins and was, not surprisingly, skeptical of my
worries. As for the phlegm, she looked down my throat with a scope and felt my
lymph nodes. Nothing again.

“Could this be stress?” I asked her. This happened right
after the election and I am a Democrat, so stress is my best buddy these days.
“If you want it to be,” she answered. I mentally put that on my list of
Obnoxious Things Doctors Have Said To Me.

But she told me that if that inflammation got worse or if
the throat didn't get better in two weeks, to come back.

The next day, the skin got redder, but rather than heading
back to the doctor, I began a diary of possible causes. The phlegm soon
disappeared, so my focus returned to my skin, to this being a dermatological
issue.

Searching For a Cause

I had worn a wool sweater the day the inflammation came on,
with a nylon camisole underneath. That seemed like an obvious cause, so I
stopped wearing any synthetics and used only cotton. I have worse only cotton
in the five months since then. No real change, although the inflammation gets
better for a bit, then worse again.

I use organic, unscented laundry soap, but I changed brands.
No help.

I tried steroid creams and ibuprofen but noted no obvious
cause and effect. I upped my dose of antihistamines. Nothing, except I got
pretty sleepy.

I began to suspect some of the supplements I was taking,
including a new multivitamin I began using the day after all this happened. Why
it would have caused anything the day before I started it makes no sense, but I
stopped it anyway. I even moderated my yoga, as it often hurts my affected arm
and I thought maybe that could be related to the rash. So I cut out anything
that put pressure on the arm.

Again, the inflammation got better, then it got
worse, and I could not determine any common factors. I concluded that it must be
a mix of causes, some sort of perfect biological storm.

Then, I got a series of bumps along my incision. One was
about a quarter of an inch in diameter. Again, I was clearly dying. If cancer
recurs, it often comes as a rash at the incision site. This time, I made an
appointment with my surgeon. But, by the time that appointment came, the bumps
had shrunk and the inflammation as a whole had greatly reduced.

He came in somber-faced and I tried to tell him I was sure I
had overreacted, but he wanted to go over my entire medical history before he
looked at the rash. I was there with a recurrence, he thought, and that was not
good news. Once he saw my chest, though, he smiled and said the bumps were
clearly not tumors. Nevertheless, he wanted me to get a chest x-ray. More radiation? I asked. Low doses, he said. He wanted to make
sure this had not spread to my lungs. Reluctantly, I agreed, acknowledging that
by deciding to go to the surgeon in the first place, I at least subconsciously
wanted the kind of answer that additional tests would give.

He called me the next day—my lungs were clear, except for
the signs of COPD, which I knew I had. No tumors.

That day, the skin bloomed a bright purple again. A reaction
to the x-ray? Who knows, but it’s hard to discount that possibility. But it
healed a bit, then bloomed bright and angry again. So I went back to my diary,
back to trying to figure out what was going on with my blasted chest.

I began to suspect the tonic water in my nightly gin and
tonic, a drink I know I am better off without, so I cut it out and replaced it
with healthier black cherry juice without gin. The rash again got better, then
worse. There just seemed no pattern.

Three weeks after seeing the surgeon, I had my yearly
appointment with the dermatologist. He looked at the inflammation, said it was
probably harmless irritation, but took a biopsy nevertheless. Again, I was
annoyed at the extra testing, but equally curious to see what it would show.
The result: my skin was inflamed, but there were no signs of cancer. The
pathologists suggested the inflammation was caused by a new drug or by contact
with an allergen of some sort.

So, three doctors, an x-ray, and a biopsy later, I was right
back where I was with my original Google search. This was likely caused by
something I had injected or exposed my skin to. Except for one thing: after the
biopsy, the rash cleared up almost entirely. More than ever before. Now, three
weeks later, it is still mostly clear—just a few faint lines remain, but those
might always be there. Gone are the red veins, the purple pools.

Why?

A Partial Answer

After the biopsy, I was advised not to shower that area—I
had to gently clean it with a cloth. No hot water flowing over it. So, my
dermatologist might have accidentally solved at least part of my mystery. I had
been taking long showers to alleviate my stress after the election and, if all
that hot water wasn't the cause, it was certainly exacerbating my inflammation.
I’ve cut down on my showers, which is an environmentally kind thing to do in
the first place. And my chest now looks almost normal, in the context of chests
that have been radiated, deflated, and deformed.

Eventually, perhaps, I will reintroduce some of the
elements—my multivitamins, yoga arm exercises, tonic water—bit by bit and see
what happens. Maybe I will eventually figure out what caused this, and maybe
eventually my skin will be completely clear and this will all be a weird
memory. What is obvious is that docs have no idea.

And right now, the only dark marks on my chest are the two
spots where the doc took the biopsy. But even they are healing nicely.

Mystery unsolved, except there are no signs of cancer. And
that, as always, is a good thing.

Wednesday, April 19, 2017

Oncology
professionals are concerned about the ability of their patients to access
cancer screening and treatment under the American Health Care Act proposed by
House Speaker Paul Ryan, according to a survey conducted in March at the
National Comprehensive Cancer Network’s Annual Conference.

A
majority of those surveyed believed that anticipated changes to the Patient
Protection and Affordable Care Act (Obamacare) would have a negative impact on
their practices and on cancer research. More than 70 percent noted that
patients have voiced concern about the anticipated repeal and replacement of
Obamacare, nearly two-thirds of whom have demonstrated increased levels of
distress.

The
survey was conducted during the period of congressional debate over the
American Health Care Act (AHCA), which was withdrawn the afternoon of March 24
when it became clear there were not enough votes to pass the legislation. Responding
to the survey were 76 oncology professionals, including physicians, academic
and community; nurses; physician assistants; pharmacists; industry
professionals; payers and patient advocates. Republicans in the House continue
to discuss ways to repeal or change the law.

“The
American Health Care Act is tabled and the ACA remains in place, but concerns
about access to cancer screening, care, and research funding remain. Today,
patients are in limbo, not knowing what action the federal and state
governments will take,” said Robert W. Carlson, MD, Chief Executive Officer of
NCCN. “NCCN agrees there are ways to improve the current health care system for
Americans with cancer, the clinical professionals who care for them, and
payers. However, we are concerned for Americans with cancer that affordability,
coverage of products and services in cancer treatment, and overall access will
be impeded by allowing health insurers to set their own rates, or by providing
states the ability to experiment with Medicaid coverage, without appropriate
patient protections.”

The
NCCN survey found:

•Fifty-five percent of respondents
reported that the anticipated large-scale changes to federal health care policy
would likely have a negative impact on their practice, research programs or
patient outcomes. Eleven percent anticipated a positive impact, and 34 percent
anticipated a neutral, or mixed impact.

•When asked to select from a list
of outcomes they anticipated would occur with changes to health care policy,
those who anticipated a negative impact (55%) indicated:

•Fewer
patients will have access to health insurance (71%) •High
deductibles will limit patient access to care (69%) •Cancer
screening rates will decline due to higher co-pays and deductibles (63%) •Patients’
pre-existing conditions could be excluded from coverage (57%) •Federal
funding for cancer research will decline (56%) •There
will be less support for mental health services (50%)

Those
who expected a positive impact (11%) indicated:

•With
increased competition for insurers operating across state lines, health
insurance premiums and co-pays will go down for more patients, leading to
improved access to care (50%) •Allowing
medications to be imported will create more competition and reduced drug prices
(50%) •Patient
health savings accounts will lead to increased price transparency for
medical procedures and medications, causing health care costs to drop
(38%)

•When asked, “What kind of impact
do you believe changes in federal health care policy will have on your
patients’ ability to afford cancer care?” 66 percent of respondents said the
impact would be negative; nine percent said positive; and 25 percent said the
impact would be neutral.

•And, to the question, “To your knowledge, are your patients
affected by health insurance policy and the possible repeal and replacement of
the Affordable Care Act?” respondents answered:

•Yes,
patients have expressed concern and demonstrated greater levels of distress
(50%) •Yes,
patients have expressed concern but no evidence of health impact (21%) •No, I
have not seen any effects (29%)

“President Trump included three key elements in his approach
to health coverage reform: repairing necessary aspects of the ACA, ensuring
greater access, and lowering the total cost of care,” Dr. Carlson said. “We are
ready to share our Network’s expertise with lawmakers to deliver a value-based
health policy to ensure that all Americans with cancer have access to
high-quality, effective, and efficient cancer care.”

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Surviving Triple-Negative Breast Cancer: Hope, Treatment, Recovery

Finally! A book about TNBC written by a woman who's been through it—Patricia Prijatel, founder and editor of this blog. If you like this blog, you'll love this book.

Patricia Prijatel

Founder of Positives About Negative and author of Surviving Triple Negative Breast Cancer

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From Symphony Sisterhood

Welcome

When I was diagnosed with hormone-receptor-negative breast cancer, I required a positive attitude of myself—I was not going to let a disease have the upper hand. I hope I can share some at that attitude with you while I offer what I have learned in my trek through this disease as a patient and medical writer.

It's a given that life ends in death. Cancer just makes you face that inevitability more directly than you might have before. To me, that means living fully right now.

Three Mountain Dogs, a children's book by Patricia Prijatel

Triple-negative breast cancer (TNBC) lacks hormone receptors for estrogen, progesterone, and Her2/neu. It affects about 20 percent of all those with breast cancer. This blog offers information and hope for those with TNBC and other forms of hormone-negative breast cancer.

Calm Spirit Note Cards

Blank greeting cards with the Calm Spirit image are available in packets of 6. They're ideal for sending a personal message of encouragement to anyone living with cancer. Boxes of six are available for $10.00 and can be ordered by contacting my friend Madlyn at madlyn.ferraro@ gmail com. Individual cards are $2.50 each.